To Friends and Family, Every year we like to share with you the progress on research to cure Cystic Fibrosis and what this means for life with Jude—and to ask you for support. Typically we send this note out in April, but between COVID and the election and everything else, we thought we would wait and send it a little later.
We are glad that we did. In a year where it seems like almost everything went wrong, things continue to go well with Jude and his health.
In October of 2019, the FDA approved the drug that we and everybody with CF has dreamed about. The new drug combination treats the particular genetic defect that causes Jude’s CF. This is the news that we have been waiting for since Jude was born.
In early 2020 Jude began taking this new drug and the results have been everything that we hoped for. His lung function, which is the primary indicator we use to track his health, continues to improve. His lungs work above the level of a typical child his age, a true miracle.
Jude is continuing to play his part in CF research to advance more breakthroughs. He has participated in probably half a dozen different clinical trials over the years. He is currently in one that we are incredibly excited about. In addition to the new drug treatment, Jude also does a number of other medicines each day, including 30 minutes with a vibrating vest and about 30 other minutes with a variety of inhaled medications. This new clinical trial is testing whether it is possible to maintain high health with the new drug while eliminating one or more of the other treatments. It will take a while for this trail to be completed, but we are hopeful. The picture above shows Jude working with the clinical trial staff.
Since Jude was born and we found out that he had cystic fibrosis, our goal has been to do everything that we could to keep Jude’s lungs healthy until the medical community could develop a breakthrough drug that could help maintain his health throughout his life. Our dream has been that he could live a full, healthy life. Our dream has been that he could avoid the terrible fate that so many people with CF before him have had, which included chronic health problems, lung transplants, and a very early death.
Because of the Cystic Fibrosis Foundation, this is exactly what is happening. Because of their incredible work, Jude is healthy and (knock on wood) is on track for a pretty healthy life. And he is making the most of it. He loves playing ultimate Frisbee, loves his friends. He enjoys watching the Steelers with me, just like I used to do with my father. He is a happy kid.
None of this would be possible without the Cystic Fibrosis Foundation. Quite simply, they have helped to save Jude’s life, and to improve the lives of tens of thousands of people with CF.
Please consider making a gift to support their work.
Thanks to all of you for everything that you have done over the years to support us with your incredibly generous checks to the CF Foundation and for your love and support.
Due to the COVID-19 pandemic, indoor events sponsored by the CF Foundation are strictly prohibited at this time. Scheduled outdoor events must adhere to strict requirements to minimize the risk of COVID-19 infection. Events may be subject to change at any time based on guidance from the Centers for Disease Control and Prevention and local health officials.
IMPORTANT NOTE ON ATTENDANCE AT OUTDOOR FOUNDATION EVENTS:
To minimize the risk of COVID-19 infection, attendees at CF Foundation events must adhere to the following requirements:
Practice physical distancing and maintain at least a safe 6-foot distance from persons outside of their household at all times
Face masks strongly encouraged and expected to be worn in accordance with local guidelines. (Note, children under two years of age should not wear masks due to safety concerns and therefore should not attend CF Foundation events where there is risk of interacting with someone outside of their household.)
Follow basic infection, prevention and control practices by regularly washing hands with soap and water or with an alcohol-based hand gel, covering your cough or sneeze with a tissue or your inner elbow.
Persons with CF should consult their physician before participation in any in-person event as they may be at an increased risk for severe illness from COVID-19. People with CF should maintain a safe 6-foot distance from persons outside of their household at all times.
FOR YOUR SAFETY AND THE SAFETY OF OTHERS:
For the health and wellbeing of the CF community, those eligible to be vaccinated are required to be fully vaccinated to join us in-person for the event. If you are not fully vaccinated, we invite you to participate virtually if that option exists.
We do not plan to ask for you to provide proof of vaccination. We are, however, counting on the fact that you appreciate the potential consequences of exposing members of the CF community to COVID and will abide by this requirement.
We cannot guarantee that all people in attendance at the event, including participants, sponsors, volunteers, and vendors, have been fully vaccinated.